Friday, April 25, 2014

From Emotion to Advocacy

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I seem to be stuck in what feels like this endless fight with Medicaid for a piece of durable medical equipment, the Krabat Pilot Crawling Device.  A device that was endorsed both by Noah's primary care provider and therapist.   Yet Medicaid has waged this war under the heading "medical necessity."   Forcing me to pursue a appeals trial with an Administrative Judge, with a successful win, only to have The State Department appeal Noah's win and file an Exception to Initial Decision.  Which required them ordering a copy of the transcript of the hearing in order to try to convince the Judge to change his mind and again deny Noah the Krabat Pilot Crawling Device.  

I received The State Department of Health Care Policy and Financing's Exception to Initial Decision in the mail a few days ago.   There are so many aspects of having to fight for Noah that stir up so many emotions.   I go from mad to sad and back to mad again all in less than sixty seconds.  I have moments where I fantasize about opening my front door and screaming at the top of my lungs to see if anyone will hear me.  My mind then wanders and I ask myself over and over how I can stop this madness.  How I can change this so that no other parent ever has to experience what I am going through?  The State Department expects me to raise the white flag.  Surrender and just give up.  I know many who would have done so long ago.  I know no one would blame me for walking away.

But then I realize that I have to push my emotions, my anger, my sadness, my tremendous frustration, and my exhaustion down to the depths of my soul so that I can move forward to advocate.  I know that I am not an effective advocate if I allow my emotions to take over the goal.  And the goal is providing for all of Noah's needs.  So I separated my anger in order to draft a Response to the Exception to Initial Decision that  was factual, direct and to the point, leaving out the all the feelings that swirl feverishly in my mind and heart.   I spent two hours away from my boys in order to draft a response for the child who has no voice.   It's hard for me not to view the State Department as an enemy.   They have forced me to fight since October of 2013 for something my child needs.  Even with a successful win,  waiting on a durable medical order could take months and push this entire process from start to finish to a full year.  One full year that Noah had to do without something because I had to fight for him.   A lost year that he could have made progress learning to crawl.   I lost a full year.  That is what hurts the most.  That I lost time for Noah because an agency forced my hand to fight.

This was my response to The State Department of Health Care Policy and Financing's Exception to Initial Decision: 

Appellant, Noah Warden represented by mother Stacy Warden, hereby submits the following response to The State Department of Health Care Policy and Financing’s Exception to Initial Decision:

Appellant finds the State Department’s assessment of Exhibits admitted is inaccurate. The State Department filed and admitted Exhibits A-E. Exhibit E was given to the State Department by the Appellant and contained two documents. One was a recommendation from XXXXXXXXXXX (the Appellant’s Therapist) and a recommendation from Dr. XXXXXXXXXXX MD, (the Appellant’s Primary Care Provider/Doctor). Exhibits F, G and H were tendered to The Court by the Appellant and copies to all parties were attached to the Notice of Hearing in this case. Furthermore, there were no objections from the State Department to admitting Exhibits F, G and H.   Appellant likely should have numbered Exhibits rather than using alphabetic identification, but understood that the Court was streamlining Exhibits for easier reference.

Although the Appellant did not have the opportunity to review the requested transcript in order to file a Response to the Exception to Initial Decision, Appellant disagrees with the assessment and contradiction to Findings of Fact #2, and #4. While testimony from Appellant’s mother seems to be accurately explained, the Appellant’s physician recommended the Krabat Pilot Crawling Device would be suitable for the child both Exhibits D and E. In Exhibit D: “The following equipment is medically necessary for Noah.” And in Exhibit E: “Noah Warden has cerebral palsy and is unable to crawl. He would benefit from the use of a crawl assist device. This device will help his gross motor development and upper body strength and development.” If the Appellant’s physician felt the piece of equipment in question was inappropriate, a recommendation of medical necessity would not have been provided.

Additionally, the Appellant is disturbed that the State Department offers up testimony that was not given nor made medical fact suggesting to The Court that approval of such device could cause further injury to the Appellant. “The Appellant will be placed in a negative position and can add additional harm to the Appellant with the use of the Crawling System.” There is no documentation to support such an absurd assumption, nor testimony offered in the transcript discussing any potential harm to the Appellant.

The State Department indicates that they do not dispute the information from the Appellant’s physician. If that were the case then there should be no question as to the medically necessity, as it is clearly outlined by the Appellant’s physician in not one, but two admitted Exhibits. The State Department indicates that they do not dispute Ms. Warden’s familiarity of her son’s conditions, yet contradicts that statement in challenging her assessment of her child’s head, neck and trunk control and provides an implication that she is pursuing a less than safe device for her child. 

Appellant further takes issue with the suggestion that the Appellant’s mother has no training, education, knowledge or experience in determining if her own child’s head control is adequate enough for the device. The State Department had the opportunity to cross-examine Ms. Warden as to her qualifications and failed to do so. The State Department has no knowledge to represent to The Court what the scope of her qualifications may or may not be. To imply to a Court of Law that a parent of a child with special needs requires formal training, education, knowledge and experience in recognizing appropriate durable medical equipment is a bold move. That statement goes way beyond the scope of determining medical necessity. Additionally, The State Department did not question whether or not the equipment trailed shared similarities or differences to the Krabat Pilot Crawling Device and is attempting to create a record that doesn’t exist. 

Appellant strongly disagrees that the State Department has sought out the most straightforward approach to establishing medical necessity and in fact feels the State has deliberately drawn out approval for this request, incurring unnecessary costs, now including a transcript of proceedings. 

Based on the information presented, Appellant requests The Court deny the State Department's request to overturn the Court's decision and that the Court's original decision to grant the Appellant the Krabat Pilot Crawler Device stand.  

And now I just sit back and wait for the Judge's decision while wishing that there was a better way to pursue help for my child.  I dream of a day when special needs parents don't need to fight so hard. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.